Overview
Posterior extramedullary conus spinal cord lipoma is a rare type of spinal lipoma, which is a benign (non-cancerous) fatty growth that develops on the outside of the spinal cord near its lower end, called the conus medullaris. The term 'posterior' means the lipoma sits behind the spinal cord, and 'extramedullary' means it is located outside the spinal cord tissue itself rather than growing within it. This condition is a type of spinal dysraphism, meaning it is related to abnormal development of the spine and spinal cord during early fetal growth. This lipoma can press on or tether the spinal cord, which may lead to neurological problems over time. Symptoms can include lower back pain, weakness or numbness in the legs, difficulty walking, bladder or bowel control problems, and changes in foot shape or leg length. Some patients may have a visible lump, dimple, or patch of hair on the lower back. In some cases, the condition may be found incidentally on imaging done for other reasons, and the person may have few or no symptoms. Treatment typically involves monitoring with regular neurological exams and imaging. If symptoms develop or worsen, surgery may be recommended to remove or reduce the lipoma and untether the spinal cord. The goal of surgery is to prevent further neurological decline. Outcomes vary depending on the size and exact location of the lipoma and how early it is detected. Early diagnosis and careful follow-up with a neurosurgical team are important for the best possible outcomes.
Key symptoms:
Lower back painWeakness in the legsNumbness or tingling in the legs or feetDifficulty walking or changes in gaitBladder control problems such as incontinence or difficulty urinatingBowel control problems such as constipation or incontinenceFoot deformities such as high arches or clubfootDifference in leg length or leg sizeVisible lump or fatty mass on the lower backSkin dimple, hair patch, or birthmark on the lower backProgressive loss of sensation in the lower bodyMuscle wasting in the legsPain that worsens with activity or straining
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Posterior extramedullary conus spinal cord lipoma.
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Specialists
View all specialists →No specialists are currently listed for Posterior extramedullary conus spinal cord lipoma.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Posterior extramedullary conus spinal cord lipoma.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.How large is the lipoma and is it causing tethering of the spinal cord?,Do I (or my child) need surgery now, or can we safely monitor with regular imaging?,What are the risks and benefits of surgery for this specific case?,What is the chance of the spinal cord re-tethering after surgery?,How often should follow-up MRI scans and neurological exams be done?,What symptoms should prompt me to seek urgent medical attention?,Are there any activity restrictions I should be aware of?
Common questions about Posterior extramedullary conus spinal cord lipoma
What is Posterior extramedullary conus spinal cord lipoma?
Posterior extramedullary conus spinal cord lipoma is a rare type of spinal lipoma, which is a benign (non-cancerous) fatty growth that develops on the outside of the spinal cord near its lower end, called the conus medullaris. The term 'posterior' means the lipoma sits behind the spinal cord, and 'extramedullary' means it is located outside the spinal cord tissue itself rather than growing within it. This condition is a type of spinal dysraphism, meaning it is related to abnormal development of the spine and spinal cord during early fetal growth. This lipoma can press on or tether the spinal
How is Posterior extramedullary conus spinal cord lipoma inherited?
Posterior extramedullary conus spinal cord lipoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.